"As you accumulate more equipment to help with your quality of life, take a photograph of how it is intended to be set up. Print this out and place in a binder with simple instructions on how to operate. This will help anyone not familiar with the equipment know exactly how it should look. Additionally, have a regular refresher training for everyone in the family, especially if they don't operate it every day."
San Antonio, TX
"We learned so much by trial and error. We lived in a sea of equipment—some worked, some did not. My husband had bulbar ALS, which has its own issues. The $20 Boogie Board writing slate was a godsend. He learned about it from someone else's post online. I know every person is unique, but if we have figured out anything that would help someone else, I hope it will find its way into your guide."
Before making any major modifications to your home, talk with your local ALS Association chapter, physical therapist, or occupational therapist. Instead of spending money on a remodel, the right piece of equipment could perform a similar function for much less.
Instead of building a permanent ramp, for example, maybe you could borrow or buy a portable one. Instead of replacing your bathtub with a walk-in/roll-in shower, you might be able to use a tub transfer bench or tub slider.
Did you know that you can receive Medicare disability benefits—health insurance and disability checks—even if you are under 65? People with ALS are fast-tracked, which means that you will have to wait five months (instead of the standard 24) before you begin receiving benefits. Most ALS patients qualify for Medicare disability benefits.
If you are struggling with swallowing and related bulbar issues, a suction toothbrush can both brush your teeth and suction out excess toothpaste and saliva.
If you are traveling to the beach, many lifeguard stations provide special wheelchairs with big tires that help you maneuver across the sand. Availability may be limited. If the lifeguard station does not have a beach wheelchair, ask if there is a place nearby where you can rent one by the day or week.
If you are planning to travel within the U.S., contact the nearest ALS Association chapter or MDA office to ask if you can borrow equipment once you arrive, which prevents the hassle of traveling with everything. Also ask if the equipment can be delivered to your hotel or destination. Equipment availability will vary by location.
Bidets are not only used in Europe. If you have hand weakness and are having trouble wiping yourself clean, this special toilet seat with an adjustable cleansing water spray can be installed on your existing toilet. Some people say this is one of the best things they have for maintaining independence.
If you are struggling to get in and out of your car or don’t have a way to get to your clinic appointments, there are alternatives. Clinic is too important to miss.
Ask your local ALS Association chapter if they have programs that can pay for and arrange your transportation. There are also transportation companies and taxi services with handicap accessible vans. Talk with your chapter’s care services coordinator or the social worker at your ALS clinic about options in your area.
Fatigue is a common everyday challenge with ALS. Learning to pace yourself and your activities is very important! If you push yourself too hard, fatigue can affect you even more. It is okay to exercise, but know your limits and do not strain yourself by trying to do things like lifting heavy weights.
Remember that medical equipment like walkers can help you conserve energy, be safe, and make your life a little easier.